Focus on Pediatric Spinal Cord Injury
Rebecca Adcock, PhD
In January 2006 the AASCIPSW Clinical Practice Committee (CPC) suggested Reading List was placed on the Website and later sent to members via email. We are privileged to have Sara Klaas, MSW, C-ASWCM on the committee. She works at Shriners Hospitals for Children in Chicago, Illinois and added some additional relevant references to the pediatrics topic area of the Reading List. The following annotations focus on three of the most recent and relevant pediatric spinal cord injury references.
Johnson, K. A., Klaas, S. J., Vogel, L. C., & McDonald, (2004). Leisure characteristics of the pediatric spinal cord injury population. Journal of Spinal Cord Medicine, 27, Supplement 1, S107-109.
Children grow developmentally through the work of play. A spinal cord injury (SCI) sustained in childhood or adolescence, however, can interrupt an individual’s ability to participate in leisure activities independently and with peers. The authors’ objective was to examine leisure interests, frequency of participation, and satisfaction with these activities in children and adolescents with SCI. A questionnaire was developed that asked open- and closed-ended questions about 49 recreation activities in addition to satisfaction rates based on a 5-point Likert scale.
Sixty-six children and adolescents with SCI, ages 6 to 21, served as participants in the study. The mean age of injury was 10 years old, 45 participants used manual wheelchairs and 17 had power wheelchairs. By level of injury, 19 participants had sustained a C1-C6 injury, 16 a C7-T6 injury, and 37 were classified as T7-S4 injuries. The 49 leisure activities were subdivided into subsets of mild, moderate, and high intensity, and analyzed by level of injury. Across all injuries, the three most frequent activities were in the mild intensity range: listening to music, computer use, and watching television. Time spent in these activities was found to be higher than those of able-bodied peers. As intensity level increased, participation rate decreased across levels of injury. Those with low level SCI (T7-S4) spent more time in high-intensity activities than those with higher level injuries. The middle injury level (C-7 to T-6) participants, however, spent the most time and in the highest number of leisure activities as a whole. Satisfaction rates were consistently high across all participants and activity levels.
Given the indication that children with SCI spend more time in sedentary activities no matter their level of injury, developmental growth is at risk. The authors suggest that this information be used for continued research and intervention specifically for the pediatric SCI population.
Vogel, L. C. & Anderson, C. J. (2003). Spinal cord injuries in children and adolescents: A review. Journal of Spinal Cord Medicine. 26(3), 193-203.
This article is an invited review which provides a clear, concise overview of pediatric spinal cord injury (SCI) in the areas of epidemiology, medical and surgical complications, and psychosocial issues, all within a developmental framework. Issues such as neurogenic bowel and bladder, pressure ulcer prevention, and autonomic dysreflexia to name a few, must be managed according to a child’s age, and changes occur with physiologic and emotional growth. Other topics addressed include spasticity, spinal deformity, hypercalcemia, and latex allergy.
Maximizing function with an emphasis on primary care, prevention, and health maintenance is discussed with the goal of providing children with SCI an opportunity to live productive and satisfying lives as they grow to become adults.
Aitken, M. E., Korehbandi, P., Parnell, D., et al. (2005). Experiences from the development of a comprehensive family support program for pediatric trauma and rehabilitation patients. Archives of Physical Rehabilitation Medicine, Jan; 86(1),175-179.
The objective of this article was to describe a comprehensive support and education program recently developed at Arkansas Children’s Hospital for families with a child who has experienced traumatic injury. Program development focused on children ages 3–18 years old, and who primarily sustained a traumatic brain or spinal cord injury. Various instruments and surveys were used to track injured children and their families after hospital admission and then by telephone interview over a six-month period following rehabilitation. Objective findings were then clarified through focus groups of parents with acutely injured children, parents of children in outpatient therapy, and rehabilitation staff.
As a result, a program development team then derived “Be ALERT” (Act, Listen, Educate and Respond to Trauma). Administered through a project coordinator, patient and family education is emphasized with parent support groups and consistent material dissemination that is age- and injury-specific. Parents were assisted by a specialized organizer to keep materials and track their child’s progress. Discharge coordination continues through a Be ALERT office providing follow-up services to meet education and family support needs.
Early evaluation of the program indicates that family needs are being addressed, and long-term effectiveness of the program is in progress. The authors discuss some of the barriers encountered with full implementation of the program along with thoughts about future directions to improve and sustain a family support program.